Meeting the Challenges of Diagnosing Eating Disorders

At the International Conference on Eating Disorders in Barcelona, Spain, a special plenary session addressed a spectrum of current challenges to diagnosing eating disorders. Four eating disorders experts urged the audience to take a new look at old definitions and methods, to consider sociocultural and transcultural implications when making diagnoses, and to become better educated about diagnosing eating disorders in children. Diagnostic challenges that will be addressed in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) were also discussed.

A Challenge to Current Ways of Diagnosing Eating Disorders

Walter Vandereycken, MD, PhD, Professor of Psychiatry at Catholic University of Leuven and Clinical Director of the Eating Disorders Unit at Alexian Brothers Psychiatric Hospital, Tienen, Belgium, pointed out the very elusive and often contradictory nature of the diagnosis of eating disorders. In his presentation, “Eating Disorders DiagnosisA Constructive or Constrictive Enterprise?” Dr. Vandereycken told the audience that the word “diagnosis” can be either the product of a process or the process itself. A good diagnosis, he said, should simplify complex phenomena, reveal what is not evident, create a bridge to treatment. At the same time, the diagnosis should respect each individual patient.

Inconsistencies and conceptual weaknesses are inherent in the current diagnostic system because most eating disorder clinicians see larger numbers of atypical than typical patients, he said. In EDNOS (eating disorder not otherwise specified) patients, for example, the boundaries are weak because of the high incidence of comorbidity, and the fact that conditions change over time. “What is the value of the diagnosis if in six months it changes?” he asked. Because of this, should diagnosis move from the current state of defined categories to a spectrum, or transdiagnostic approach? he asked. “Diagnosis is not a value-free thing,” Dr. Vandereycken said; adding, “Instead, we are dealing with human experience and most criteria are not factual but derived from evaluation. These are not facts; instead, we have to rely on what patients tell us,” he added.

Legal and financial issues come into play as well, Dr. Vandereycken said. Health insurance companies rely on certain defined diagnoses for reimbursement. A DSM-based diagnosis is a must for reimbursement and coverage for patients. Also, he noted that for example, the high mortality rate cited for anorexia nervosa (AN) is misleading because it is based on clinical studies, not community-based samples. The DSM acts as a diagnostic credit card, he added, and for economic and profit reasons a treatment industry has sprung up based on would-be anorexics and would-be bulimicswhat Hilde Bruch called the “me-too anorexics.”

Dr. Vandereycken also suggested that clinicians consider that AN and BN may be examples of modern hysterical promotion of prototypes in the professional world. Care with labeling a patient is also important, he added, asking, “Why does a patient label herself as a patient?” He noted that, “anorexics come in and say they don’t have anorexia but have read about a disease they claim they don’t have. We should ask ourselves whether we should ask the patient to look at other labels than eating disorders,” he said. A label could be avoidance of other problems, and clinicians must be very careful since a diagnosis with a medical implication can be a relief, but too often becomes a belief, he said.

Sociocultural Impact on Diagnosis

J. Armando Barriguete-Melendez, MD, PhD, FAED, a psychiatrist with Bio-Clinique Mexico, shared ideas and suggestions for working with indigenous people and improving the ability to make transcultural diagnoses of eating disorders. Dr. Barriguete-Melendez described his experience working with patients and families from indigenous cultures in Mexico, where there is a mixture of millions of people and more than 56 languages.

Dr. Barriguete-Melendez noted the importance of understanding the history and culture of a group, then including evaluation skills, including understanding the influence of race and gender, and the importance of the family. “Culture gives meaning to all facts,” he said, adding that culture is much like oxygen: you realize how important it is when you don’t have it. Before a diagnosis can be made, one must understand the culture and psychopathology, and how people handle stress and malaise, and how all of these affect the symptoms, he said.

He noted that the importance of culture upon disordered eating has largely been a footnote thus far in diagnostic guidelines for eating disorders. He also pointed out that the 1987 revision of the DSM III was the first time culture was included, when the American Psychiatric Association established a task force to work on transcultural issues. In 1994, consideration of a person’s cultural background was included in the DSM-IV. In the DSM-V, Dr. Barriguete-Melendez would like to see a number of points covered, including the importance of cultural variables, and the social significance of human experience, culture, stress, and how malaise affects symptomatology. “We have to observe and describe the behaviors before we go on to make the diagnosis,” he said.

Eating and feeding behavior represent a social and cultural structure going back to our ancestors, he noted. For example, when Dr. Barriguete-Melendez and colleagues studied babies and mothers in an indigenous culture, they found eating and feeding was an early model to manage internal tension and a bridge for interpersonal relationships. Dr. Barriguete-Melendez and his group decided to investigate traditional practiceshow a group ate, how they nourished themselves, and their attachment to cultural traditions. The researchers also sought to learn more about food and developmental stages, including rites of passage and initiation rites. Among one indigenous group, the researchers found the people had 17 different ways to describe “corn” and three different ways to talk about eatingeating just to satisfy hunger, eating a lot, like drunken animals, and eating when there was a relationship problem to share.

To better understand how eating disorders develop in immigrants, Dr. Barriguete-Melendez and co-workers evaluated how teens adjust when they move into a new culture. In some traditional groups, making an appointment for girls alone is unheard of, and they are terrified of going to a physician. Instead, the physician and group have to include the family. They also established a culture clinic, to include some traditional practices in their methods and to find out how patients think about their own origins. Translators were provided to help bridge the language gap.

When asked how culture might impact the expression of an eating disorder, Dr. Barriguete-Melendez noted that in such groups, suffering is expressed differently from the way it is expressed in current American culture. In one native group, for example, the researchers found people suffer when they lose their social network or when they are separated from their families. Eating behavior is a part of a strong cultural network and when eating behavior stops being part of the social network, trouble begins. This cumulative effect of inclusion is particularly important with poor rural people, indigenous groups, and the disabled, he said.

On to DSM-V

Dr. B. Timothy Walsh, Professor of Psychiatry at Columbia University and Director of the Eating Disorders Research Unit at New York State Psychiatric Institute, outlined some of the challenges and questions that will be addressed in the DSM-V, due out in 2011. Dr. Walsh served on the committee for the DSM-IV, and has been appointed to the committee for the DSM-V.

“Why have a DSM?” he asked, noting that it is appealing to think that the material in the DSM could be easily divided along mental and behavioral dividing lines. However, he added, the purpose of the DSM is to provide clinical guidelines for people caring for patients in their practices.

He also noted that at the crudest level, the DSM is the standard insurance form that North Americans must fill out and a diagnosis must be insertedwithout this there is no money, he said. This is not the real reason to have diagnostic guidelines, and if the guidelines are bad for the eating disorders field, they should be addressed and changed, he said.

Some issues that need to be addressed, according to Dr. Walsh are the weight guidelines for anorexic patients who are unable to maintain weight, the subtyping methods for AN, the issue of amenorrhea as a criterion for the diagnosis. Currently the DSM-IV suggests that 85% be used as a cutoff point. Although it was meant only as a suggestion, clinicians are taking it literally, as a rigid rule, Dr. Walsh said. “We can do better,” he said, suggesting that using the patient’s body mass index might be a better way of determining weight gain. He also questioned whether the binge-purge subtypes are useful. The issue of amenorrhea as a criterion for the diagnosis has been challenged by many investigators, but the database against it isn’t yet overwhelming, according to Dr. Walsh.

There are similar concerns about bulimia, Dr. Walsh noted. For example, where does a normal large meal end and a binge begin? He pointed out that the DSM-IV requires at least two binges a week and compensatory behaviors at least twice a week in order to diagnose bulimia nervosa. A better guideline might be more helpful. Subtyping purging versus nonpurging individuals is also difficult, he said, and it is also hard to nail down fasting and excessive exercise.

“EDNOS is like the 400-lb gorilla in the room,” Dr. Walsh said. Probably the majority of people coming to eating disorder clinics have EDNOS. EDNOS is such a heterogeneous category that it is a problem, and the category needs to be narrowed down, he added. There also are relatively few evidence-based disorders beyond purging and night eating syndrome, he said.

Establishing more definite diagnostic boundaries might be a good idea, but where are they? he pondered. One suggestion has been to add a category of Purging Disorder, which shares a lot with bulimia nervosa; perhaps it could be a subtitle, he added. But, if this is done, then the category would include non-purgers with purgers, AN purging, BN nonpurging, and so forth. Or, the group could decide that these phenomena have more in common together than separately, and have no boundaries but describe them in another way.

Another area that needs improvement is defining eating disorders in younger children, and a goal of the DSM-V is to improve this portion, said Dr. Walsh. The new DSM will also coordinate better with the 11th edition of the International Classification of Disease (ICD-11), using a generic code for both.

The DSM-IV is consciously conservative, he noted, because making changes can be very disruptive. However, he added, “Change comes with a price, and gains are worth the pain.” Past editions have had a high threshold for change, he said; for example, binge eating disorder didn’t make it because not enough data showed that the diagnosis was useful or that it was a distinct category. He pointed out that the DSM process is open, and seeking comments from everyone. Because it is data-based; a change is made only when hard data show the need. “Eating Disorders are a small part of the DSM,” he added, noting that of the 350 diagnoses listed, three are eating disorders.

A careful timetable has been worked out, beginning with reviewing data from conferences during 2004-2007; appointment of DSM-V work groups in 2007; and publication of the final version in 2011, although that is a tentative date, he added.

Finally, Dr. Walsh noted that the DSM system should follow the field, not lead it, and what professionals in the field feel is the best way to categorize patients should be the rule. “We need your help,” he told the audience, and pointed out that the DSM committee welcomes data, clinical characteristics, and good clinical studies that collect data can help inform the process. Dr. Walsh told the audience that comments and progress on the DSM-V can be followed on the Internet at: www.dsmiv.org.

The Challenge of Diagnosing Eating Disorders in Children

Dasha Nicholls, MBBS, MRC Psych, lead clinician at the Feeding and Eating Disorders Service Department, Great Ormond Street Hospital, London, told the audience that a developmental perspective on disordered eating includes the range of feeding and eating problems seen across the spectrum of childhood into adolescence.

Dr. Nicholls described the still-slow development of diagnostic criteria for eating disorders in children. In the ICD 9, for example, for those with AN, there was a tendency to give children an emotional or behavioral diagnosis, which came from a belief that if you gave an adult diagnosis, it would be set in stone. Adult criteria for eating disorders often miss the mark for children, she noted; for example, it is difficult to pinpoint psychopathology in children because abstract reasoning is not fully developed; it is also hard to define “loss of control.” Although Hilde Bruch wrote about the infant’s struggle for control in infant-mother relationships, no such link between this and the development of an eating disorder has been shown, she said.

Data on feeding disorders are also nearly nonexistent, she said. Some patterns have been noted. For example, in one study, 442 patients were divided into two clusters. In the first group, children were poor eaters and had little interest in food, and had difficulties with texture. Overall they had poor weight gain, and ingested insufficient calories for growth. The second group had an emotional reaction to food, including fears and panic about food.

As for early markers of eating disorders in children, there is little evidence that feeding disorders in children go on to develop into eating disorders, she said. And, the state of the science is such that it doesn’t allow clinicians to specify the risk of developing an eating disorder.

Dr. Nicholls said that despite the lack of data, it is possible to reliably diagnose eating disorders in children, and that they can be differentiated from adult eating disorders. She reiterated that there is very little relationship between feeding and eating disorders, and that diagnosing eating disorders in children provides very little information about prognosis.